Friday, 16 December 2011

One Year on

Well it's been a really quick year, it's flown by.  Next week will be the one year anniversary of Evan's operation and we will be raising a glass or two for sure.

Firstly, THANK YOU to everyone who has got us to this point.  This Christmas and New Year are going to be the best ever because of you.

Evan continues to get stronger.  It is taking a bit longer than we thought to get him walking, but he is getting there slowly.  In school he is now walking with crutches or independently.  His independent steps are slow, but they are independent and he has achieved 175 steps in one go.  He is so much more confident and can do things for himself now like raiding the treat cupboard, walk to the bathroom, climb the stairs.

Only a short update, but hopefully you like it.  Happy Christmas to you all and a Happy New Year.

Paula, Steve and Evan x

Friday, 7 October 2011

Promised pictures

So last time I posted I said I would put some photos in.  2 months later and here they are :@)

We went to Florida in the summer because Evan really deserved a break.  No physio the whole time :)






As you can see, I should have stayed at home and dressed in character costumes, it would have been much cheaper



 When we returned we had a fabulous party for Evan's birthday.  Evan couldn't wait to get into his pirates outfit.  He was able to get much more involved with the games, becasue he is much more mobile now.



Evan has started full time school and here he is the first week.  He loves it and is integrating really well.  The other children push him on and he has managed 39 independent steps so far.   He is growing all the time and this tends to set him back, plus he has hypermobile joints which really makes it twice as hard for him to progress.  However, he can do many things he couldn't previously such as horseriding:




We would never have put him on a horse before surgery, he would have fallen off and this was a big horse.  The reduced spasticity in his legs means he can really work the right muscles to stay sitting.  He is also doing well at swimming, although both horseriding and swimming are out of the window for 6 weeks as he had a minor operation on the weeked, which means both are banned.  There is also a big improvement in his cycling as well; no more stop start, stop start.

We have been for a review of his hips which was the main reason for having the surgery.  It was felt that if it was delayed the hips may dislocate.  The good news is that there is an improvement, so looking good for no further surgery there.  If nothing else happens we have this to be thankful for.

The only concerns we have at the moment are with his joints, which are extremely bendy.  This is hampering his development.  We have discussed with Dr Park and will be heading back for a week in St.Louis in April next year.  We will see Dr Park, Dr Dobbs (Orthopedics) and also have physiotherapy.  We are looking forward to the return visit to get the expert help, but also to see all the people at Children's Hospital that have helped Evan.

Next update when we have something brilliant to tell you.

Friday, 8 July 2011

Step by Step, Closer and Closer

Firstly, apologies to everyone for not updating this blog more regularly, working, physio and the rest is hard work and leaves little time.

There hasn't been much to report, but about 3 weeks ago Evan started complaining his hip was hurting so we really slowed things down.  He hadn't been progressing and we felt he was dragging his legs more and not responding well to physio.  This was quite disheartening, but after a few weeks we stepped it up again - I think he just needed a rest.

He has started wheelchair basketball now and is really enjoying it.  He gets chattier and chattier by the day which is good but means he doesn't listen.  I've been told this is normal for a nearly four year old.

The big breakthrough happened this week.  earlier in the week he went for a session with Bobath which was quite intensive.  the next day he stood for 8 minutes unaided and took 18 consecutive steps, then 10 consecutive steps.  It was amazing.  He had been trying to earn his Toy Story 3 Nintendo Game for about a month (30 steps) and then he just blew it out of the water.  The next prize was 40 steps for an Elefun Game.  His private physio came and he did the whole lot - actually 50 - in the session.  Not all together, but it's a huge leap for him to even walk for 50 steps bit by bit, 10 at a time.  Later that day he still wanted to do more so he could win the next prize - it's gone up to 70 steps now otherwise I'll be bankrupt.

Lots of great things happening.  he will start horse riding to help his core stability in August and swimming lessons in a few weeks.  He is so much happier now and is proud of his walking achievements.

At the end of the month we are taking him to Disney in Florida.  This is his big treat for his birthday while he is there and for all the things he has gone through over the last year or so.


If anything major happens I will write again and will also try and keep posting on his facebook page.  Thanks to everyone who made this happen.


Paula

Monday, 4 April 2011

First Steps

A lot has happened since my last posting.  Evan has been working hard in physio three times per week and adding in swimming, cycling and daily stretches/physio with Sasha.

It looks like it is starting to pay off.  His private physio Liz had him stepping over high hurdles using his sticks, something he would never have done before.  The You Tube video below shows him doing this really well.  He has also started walking with one stick only, especially in school.

 Evan Hurdling

One of the biggest breakthroughs has been Evan's ability to balance unaided, starting with 30 seconds and moving up to 2 1/2 minutes.  It has really helped him develop the additional gains we have experienced over the  last month and a half.

Evan standing

We finally saw the Orthopaedic Surgeon on Thursday in the UK who is happy with his progress, but he would like to check him in 6 months.  We need to reassess his orthotics for his feet however as he has some hyper mobility and we are not sure his feet are being fully supported by his splints.  This means his feet are bending outwards and this could cause future problems.  If we can't get an early appointment with the NHS, then we will have to go private.  The funds raised will help us achieve this.

The day after I went to Paris for a meeting and to catch up with some good friends who helped raise awareness of our fundraising efforts and contributed to us achieving our targets.  I was able to tell them all about Evan's success, not knowing that what I told them would be surpassed by the end of the day.  At 3pm I received the call to to give me the news I had been waiting for since the surgery - EVAN WALKED INDEPENDENTLY.  He started with two steps and then on to 5.  He hasn't managed so much since, but he has done it now and I know he will continue to improve month by month, day by day.  I have to give special mention to Sasha who works tirelessly with him and gets so much out of him.

Evan Walking Independently

THANK YOU TO EVERYONE WHO HAS MADE THIS POSSIBLE.


Sunday, 20 February 2011

Hard work

The last two weeks have been really hard for Evan.  Physio is going really well and all the physios involved are reporting progress.  This is down to their hard work and the continued therapy at home.

Evan is only three and he rarely complains when he has to stretch twice a day, wear his knee immobilizer for an hour at a time and endure prodding and pulling. He is getting quite tired and he has started sleeping in the afternoon quite a bit.  He is using a lot more energy, so it is to be expected and we are going to up his snack intake to try and help him.

We have taken Evan out on his bike a few times and he is much better at pedaling.  He doesn't have to wear leg calipers anymore which is great. Before surgery he couldn't start himself off on his bike, but now he is able to do this.  He has also started back to swimming and is starting to get the confidence for me to let go a little.  This would never have happened before as he would have rolled over from being too stiff. 

He is now managing to stand unaided for 30 seconds, but still needs something behind him to give him comfort. The biggest gain has been his ability to lift his foot while standing unaided to try and step.  At the moment however he is then falling backwards as his balance is not quite there.  Still, this is a massive step for him and hopefully in the next post he will have managed to do it.

I also hope to have some photos to share next time.  We have some videos which I will try to update this post with once we download them. It's been a difficult transition from being in America to coming home for all of us.  Trying to juggle work, home and physio is a challenge, but we are getting there.

Tuesday, 1 February 2011

Back home

Well we have left our St. Louis home and the wonderful people there and are now back in Wales.

Nicole
Michael and Beth


We miss them all, but will see Michael at least this weekend in a party in Daventry being held for families that have been for surgery and families going for surgery.

Now we are back we have been trying to get back into a routine.  The first week was difficult as we were all jet lagged until at least Thursday.  We have been trying to fit in his physio, stretches and other activities like cycling, but it has been hard with us being in work and Evan being in school.  I want Evan to enjoy school with the other children so physio is really off limits.  Sasha is doing a fantastic job with him and he is really coming on, so although it isn't perfect, I don't think we should beat ourselves up if we don't do everything.

We have started physio sessions and had a really positive first session with Stephanie is NHS physio, then Sian who covered for her whilst she is on holidays.  this was lovely as Sian was Evan's physio when he was a baby.  We also have a private physio who is working with us and I am positive with this combination and a potential extra session from the NHS that Evan will grow in confidence and strength.

So what progress?  Well Evan is now getting up from his bench himself, standing and balancing.  The clip from youtube below shows how much he has come on as we could never imagine this before surgery.  We are sure he will walk within the year.



We did a piece for the Echo and ITV Wales to show his progress.  He is doing really well walking on his sticks and is actually asking to go on them.  Prior to this week we were really struggling to get him to use them and he wanted his walker.  He now understands his walker is for outdoors and his sticks for inside.  Coincidently today the Fire Service was there and he had a real treat being taken around in the fire engine.

The links to the Echo online video and article are below:

Video

Article


Last weekend we met up with Taliesin Campbell, his parents Claire and John and his brother Gethin.  They are now fundraising for the same surgery as Evan and I hope seeing Evan has given them a glimpse of what could be in store for Tal.  We will be helping with the fundraisingand will post details of events to Evan's facebook page headed "Tal's Good Feet".  If anyone wants to know more about Tal or help out then please take a look at his website at:

www.talsgoodfeet.org

By the time I got to publishing this update we had already been to the SDR party.  What a fantastic night.  Didn't get to speak to everyone as it was so busy, Evan wanted to walk around constantly and we were running around after him.  Met some great families looking to go over for the same surgery and caught up with some Facebook friends.  Evan loved the Magician and meeting up with Michael again.  Thanks to Dr. Park and Joan for the gifts - they gave gifts to every child which says a lot seeing as some people warned us about the commercial side of USA medical services.

I have pictures of the night, but will post later so I don't delay.  However, you can read some of the stories of the children below as there was an article posted in the Daily Mirror:

Daily Mirror

Thanks to everyone who has been following the blog and for all the support you have given us on our journey.

Friday, 14 January 2011

Coming to the End - I cant believe it's been nearly a month

On Sunday we went  ice skating and in the afternoon we went to the zoo with Abi, Talia and Tim to see the penguin parade.  The kids really enjoyed themselves, but it was absolutely freezing.




On Monday at physio Evan didn't do as well, until the end when he balanced really well on a gym ball which he couldn't do previously.




In the afternoon he amazed us by walking with his sticks on his own, but what topped it off was:


"HE STOOD ON HIS OWN NOT HOLDING ON TO ANYTHING
FOR THE FIRST TIME EVER"



This is the reason we came here and our goal for the trip that we thought we wouldn't achieve so soon.  Thank you everyone for making this happen for Evan.

The rest of this week has paled into insignificance, but he has been showing his new trick off every evening to his friends and is getting more and more confident on his walker and his sticks.  in fact, we may have to relegate his walker as he is getting too fast wanting to jump around in it.

video


We are coming to the end of our stay, but it is just starting for others.  Annabelle and her family are now back at the hotel and it has been lovely seeing her rapid progress.  She is already in her walker, way ahead of where Evan was at the same stage and she is a determined little girl who we know will do well.  The last social evening was on Wednesday after a leaving party at Carrie, Tim, Abi and Talia's apartment.We will all miss social evening as it has been a great way for the kids to inspire each other. 

Abi, Evan, Annabelle, Amelia and Talia with Sasha at dinner


This will probably be the last post until we return home unless Evan decides to walk unaided.  We have had ups and downs during the journey, but it has been a fantastic experience which we are grateful for and Evan a new start in life.  We have met some great people who we hope will be friends for many years to come.  We look forward to coming back in 2012 to show all the fantastic staff at St. Louis what they have achieved for Evan.  Thank you to Dr Park, James Lee and dr. Dobbs.  Special thanks to the physio team, in particular Michael, Beth and Nicole who have worked hard to help us get Evan where he is.  We are really looking forward to seeing Michael at the SDR party on 29th January in Daventry.

Sunday, 9 January 2011

Farewell to Friends

6 Jan: We had a slow start in physio and Evan was quite distracted.  He wasn't co-operating on the treadmill so we tried another new piece of equipment the Biodex.  This helps with resistance in the legs and movement of the leg up and down.  He was still distracted but we told him it was a space rocket and this got some response out of him. 



Michael also showed us a good way to help with his balance and we have a great video of this below.  This is one for Steve given my dodgy shoulder.


Balancing Act

In the afternoon we went to The Magic House to show Sasha what fantastic facilities there are for kids here.  We had a great afternoon and Sasha had the shock treatment while Evan had a helping hand!





In the evening Inside Out were filming the next stage of Abigail's story.  Carrie and Tim asked all the families to join them for dinner downstairs to get involved and we had a fantastic evening. 

Hansens, Newton-Smiths and Podgorskis

Rafal and Evan - such a nice picture

The kids really showed off.  I'm annoyed with myself that I didn't get a picture or video of Abi pushing the SDR train because she did so well.  Hopefully someone else did and can post the link here.  In the meantime, here's a few of the gang on the SDR train.


On the way back to the apartment Evan walked one handed for the first time ever.  Before he would try and end up pivoting on his feet close together.  He did 30 steps.  He has struggled a little bit since, but still it's a great start and he has started holding one hand only on his walker as well.  He is still only 3 weeks post surgery, so he is doing incredibly well.  The walking is on you tube link below.

Evan walking one handed.

The next day Evan did some good work playing basket ball sit to stand and working his feet to kick a football






In the afternoon we met Dr. Park for the last time and he was really happy with Evan's progress.  He has said Evan will definitely walk independently in less than a year and we will come back now in Spring 2012.

So to the last chapter of today's post and a sad one.  The Podgorski's left on 8th and this evening we went for farewell drinks at their apartment.  They really have been a big motivating factor to the kids and Happy Birthday in Dutch has been the anthem of everyone's journey.  Evan told us he loves Pola and I know he is really going to miss her.  They are similar ages and she has really spurred him on by doing so well.  We will definitely visit Amsterdam in the near future.  I will also miss her little sister Julia as she is so cute and eventually let me pick her up to throw her around - light as a feather and mischief in her eyes.  A sad day, but also a happy end as the next part of the journey for them begins - we wish them the very best and we know Pola will do well.

Wednesday, 5 January 2011

It's Magic!

On 2nd January we went to the Magic House with the other families for the afternoon.  What a fantastic place.  Evan was on his feet for over 5 hours apart from lunch and a bit of crawling through tunnels.

http://www.magichouse.org/

This is the best play facility I've ever seen and is really magic, as around every corner there was something new to see and after 5 hours we hadn't seen everything.  All the kids had a great time and we will definitely go back.

Out for a drive with Pola

The Great Escape


Presidents Hansen at the Oval Office:  Bring me some M & Ms now!!!!

Shocking

We have had some great physio the last few days and Evan tried using the coupe car like the one he has at home.  At home he can only go backwards and goes around in a circle.  By the end of the second session he had gotten the idea of moving his feet forward to move it forward so we are hopeful by the time he leaves he will be able to use the one he has.

Video footage on YouTube at this link:

Evan in his car

We went swimming for the first time since surgery, which was something I was really looking forward to.  In the UK Evan would go stiff as a board and his legs would float up to the surface which meant we haven't been able to teach him to swim.  My expectations were probably a bit high as I didn't feel it went so well. He has no stiffness in the water, but still isn't grasping the kicking and arms together actions.  Even for able bodied children it takes time though and he is still young - plenty of time.

Today he saw Michael who really enthuses him to keep going.  Evan is quite lively and likes similar characters to himself, so Michael is perfect for him.  We tried on the treadmill again going forward, backwards and side stepping.  He managed 15 minutes which is excellent for only a second go ever.  We are trying to get him to take longer steps which will help to keep his feet flat.  He walks now in small steps out of habit as he can take longer strides when he wants to.  The physio here is really excellent and Michael asked us at the end if he could have improved in any way or done anything differently.  They are so open to working with parents and learning from parents experience - we had nothing to add as it was all positive, but the thought was there and we really appreciated it.

You tube links of Evan on the treadmill:

Walking Forward

Walking Sideways

After physio we went to see Dr. Dobbs the Orthopaedic Surgeon.  We have been looking forward to this as our main concern all along and the reason for us having the surgery quickly was Evan's hip problem.  Dr. Dobbs was happy with the result of the surgery, but has said that if Evan had come to him and not had the surgery he would have strongly advised to have tendon lengthening in the groin area.  As it stands he cannot say he will definitely not need it, but the chances are reduced and with good physio he could recover.  The need for more invasive surgery is less likely.  This is great news so we now just have to ensure his hips are monitored going forward to keep checking if the less invasive surgery is needed.

All in all a good couple of days.  Evan has surpassed his walking target to lap the physio room and is getting stronger and stronger each day.  The best part of the trip other than the improvements Evan has seen has been meeting the other families.  Evan has had so much support from the children and families going through the same experience and we have met some lovely people.  This is also helping the other children who are really progressing.  Pola is getting stronger in her walker every day and runs rings around Evan.  I have no doubt she will be walking independently in the near future.  Abi took a massive step by taking a few steps independently and being able to walk holding one hand with her dad.  Well done to all of them for working so hard, even though it hasn't been an easy time for them.

Evan and Pola - so cute
Well done Abi

Sunday, 2 January 2011

Happy New Year

Quite a while since we posted, but as Evan has been getting stronger we have taken the opportunity to go out and about a little more.  On 29th we visited Union Street Station which is now home to shops and a hotel.  Evan got a Cardinals Cap so that he could get into the American spirit of things - he has picked up the accent for some words, so seemed appropriate.

On to physio in the afternoon and concentrated on standing and did some work on the scooter boards to get Evan to pull himself along with his feet.


More physio on 30th and Evan went on the Total Gym to help strengthen his muscles.  I don't think we have room for another piece of gym equipment at home!  Maybe we will get rid of the ones which are used as clothes rails currently!

 
In the evening we went downstairs for dinner and  we did a treasure hunt which seemed to really motivate the kids to walk.  It made a real mess, but they had fun so it was worth it.  The picture shows Abi, Pola and Evan walking in their walkers finding the treasure.


New Years Eve arrived and we went to physio early.  Evan did some great work climbing up and down stairs holding on to the rail. He also had squeakers on his feet to help remind him to put his heels down when walking - he does this from habit now.  It really helped and he had great fun chasing Michael - see the you tube link below.

http://www.youtube.com/watch?v=85jJcHl_ld8

New Years Eve after physio we went to the Zoo.  Unfortunately we don't have photographs as we walked in the door and were ushered into the gift shop as there was a tornado warning - four people died in Missouri, so it was quite serious as it landed in the North of the city.  After 45 minutes we were allowed to leave, but the zoo remained shut down.  Never mind, we went to the science museum instead.  We didn't have much time there so worth another visit if only to see the grossology exhibition - snot, vomit and other yucky stuff I'm sure Evan will love.  They also have a fantastic animated T-Rex which scared Evan.


In the evening Evan did some great walking and you can really see the benefits of surgery by the way he is standing in his walker.  Before his legs would be so close together which really didn't help balance and meant he got tangled up quite a lot.


After ringing Nanny and Bampy for UK New Year and watching the whole of Jools Holland's for the first time ever, we went to the Newton Smith's apartment to try to ring in 2011, but only lasted until 11:30.  Evan was exhausted and fell asleep at 11:45.  We stayed up to ring Nanny and Bampy again at midnight - 6am UK time - ha ha!



Talia and Evan playing doctors

Dr Newton Smith - this is to fit a 3 year old!!!!
New Years Day was very lazy and we slept in.  In the afternoon we had a drive around to explore and went for lunch in a Celtic Bar.  They had Port Talbot Tuna Melt on the menu - bizarre.  In the evening we all went for dinner at a fish restaurant and the kids walked around at the end.  Fantastic end to a great few days.


Evan walking out after dinner

Evan and Mummy outside Landry's Fish restaurant




Sasha arrives tonight and we are really looking forward to her being here and for her to learn the physio Evan needs when he gets home.  More news next week, hopefully showing more progress for Evan who seems to be going from strength to strength.